Statistics on progression free survival while on SSA / Lanreotide

Hello, I have a stage 3 lung NET. I found a lot of good information on Ronny Allen’s Facebook page. You might want to start there. There is a link on his page for an article called “50 Shades of Neuroendocrine” you might want to read. It will take you to his website where you will find lots of valuable information on nets.

My takeaway is eat small, eat smart, get exercise. Live your best life in the time you have.

I have posed questions like yours in the lunch and learn sessions at carcinoid.org. You might want to do the same. From all my research survival is subject to external factors as well as your current state of health.

As the research continues new information is posted at both of these sites on a regular basis.

There are a couple of good books I've read on end of life that you might want to consider. Start with “ A Beginner's Guide To The End” by BJ Miller and Shoshana Berger.

May you have many blessings on this journey.

CEB

Diagnosed with NELM 2017 with unknown primary, well differentiated grade 2 in liver and abdominal area. Surgery to remove cancer not available. Started Sandostatin (monthly injection). y-90 embolization done on one side of liver. Later changed to Lanreotide injection as diarrhea wasn't very well controlled. I've continued Lanreotide over these years with injection frequency now at every two weeks. Cancer growth has been minimal. Hope this is helpful! God bless!

Thanks ce1b, its very helpful!

Thanks normaf9, your journey is inspiring. Keep up the fight and good luch!

Pete, I don't know most of the acronyms you are using. Good luck.

Hi Peter
Are the liver Mets the full extent of your disease now? If so, has your doctor discussed a liver directed therapy such as some form of embolization? (Chemo, bland or radioembolization)
My husband had a huge tumor burden in his liver and radioembolization killed nearly all of it and left the few remaining tumors stable for 10 years (he was on lanreotide during that time)

Allow me to be the acronym buster for this discussion:
- SSA = Somatostatin analogue
https://www.cancerresearchuk.org/about-cancer/neuroendocrine-tumours-nets/treatment/somatostatin-analogues/what-are
The most common somatostatin analogue drugs used are octreotide and lanreotide

- NELM = neuroendocrine liver metastases
- PFS = progression free survival

Thanks for asking on behalf of everyone, Tom.

It’s so hard to generalize one experience to others except as an example. In 2014-15, I had surgery for primary NET in my small intestine with a secondary in the mesentery (webbing). Surprisingly in 2018, i had 20+ NET mets in my liver and started Lanreotide injections every 28 days. Had embolization in 2019 of 9.5 of the liver mets (all they could reach). In 2022, scans showed some progression of liver tumors-more and increased size. And my Mayo oncologist said after 4 years on Lanreotide for me it was becoming less effective and he recommended Everolimus oral therapy or PRRT in addition to continuing Lanreotide. I am now almost 11 months on Everolimus daily plus Lanreotide monthly. Awaiting Mayo review of my recent CT scan as I may have one new liver tumor measured at 1.9 cm. and I am having some concerning side effects of Everolimus so may have to consider the next treatment option. However, other than fatigue and not having my usual energy and too much weight loss, I feel pretty good and say that I am in pretty good shape for the shape I am in 😃. I am also 77 years old and feel grateful for every day, even those sort of crummy days. I travel and need very little help, love and enjoy my friends and family, adore my husband. So 2024 makes 10 years I have been “doing NETS”. I don’t know how long I will do as well as I am now, but I am treating this now as a chronic illness to be managed as best as I can. So over time, NETS is always with me, but it no longer consumes my every waking moment. I am not a worrier, not how I am wired. If it’s in my control, I take the necessary action. If not in my control, I let it be. Much easier to do 10 years down the road than during the first year when everything was new, unknown, and a bit scary. Good luck and stay well.

Hi Tomrennie, please see answer from Coleen Young below. Good luck in your journey!

Dear davisnrn

Thanks for sharing and hopefully your Mayo review will provide positive results! Did you ever look into Immunotherapy? If yes; is this an option for you?

I am wired the same way as you and not worried if it is out of my control. The one thing I am caring most about is that my wife will be financially secure when I am gone, whenever that is.

Big hugs, Peter